Towards a European understanding of advance decision-making: a comparative, interdisciplinary approach.

走向欧洲对预先决策的理解：比较、跨学科的方法。

• 批准号: ES/M002659/1
• 负责人: Samantha Halliday
• 金额: $ 3.88万
• 依托单位: University of Leeds
• 依托单位国家: 英国
• 项目类别: Research Grant
• 财政年份: 2014
• 资助国家: 英国
• 起止时间: 2014 至 无数据
• 项目状态: 已结题
• 来源: https://gtr.ukri.org/projects?ref=ES%2FM002659%2F1
• 关键词: Towards; European; understanding; advance; decision

The principle of patient autonomy emphasises respect for the patient as an individual, rather than as an object of concern; attempts to promote precedent autonomy aim to extend that respect to those no longer capable of exercising autonomy and so to prioritise the patient's wishes over her welfare as assessed by third parties. Advance decisions/directives (ADs) enable individuals to make choices during times of capacity that will take effect in the future when the individual lacks the capacity to make a contemporaneous decision. Advance medical decision-making occurs in a range of situations, encompassing decisions relating to end-of-life treatment, typically focussed upon refusals of life-sustaining treatment; ADs concerning physical health care unrelated to end of life care, including for example birth plans which typically include positive requests for treatments (e.g. an epidural) as well as refusals of treatment; and ADs relating to psychiatric treatment, where individuals with severe mental illness set out their treatment preferences. In each of these situations an AD can act as an important mechanism for conveying precedent autonomy, bridging the occurrence of incapacity and providing a clear statement of how the patient wants to be treated, or more usually what treatment the patient does not wish to be given.Anticipatory decision-making offers great promise and could make a substantial contribution to the empowerment of those lacking capacity, but there are important asymmetries between anticipatory and contemporaneous decision-making that could potentially undermine both the legal and moral authority of an AD. An AD is a mono-directional form of communication that takes effect only once the patient lacks capacity and is therefore no longer able to discuss alternative treatment and care options, to clarify her wishes, or potentially to rescind her previously expressed wishes. Significant problems occur because, unlike contemporaneous decisions, ADs are intended to take effect at a future time when the range of treatment scenarios and treatment that will be available may have changed, or the individual's interests may be radically and unforeseeably different from those anticipated. Moreover, practical problems may arise, including how to ensure that the AD was voluntary and that the individual had the requisite capacity to make it. Such problems are inextricably linked to the temporal and psychological distance that separates the AD from the time at which it should be implemented, but ADs also call into question the interplay between society's interest in upholding the sanctity of life and the patient's right to self-determination. As a result, ADs are usually subjected to stringent validity and applicability requirements, requirements that typically give significant discretion to the healthcare professional charged with implementing the AD to determine whether or not the AD is binding in the treatment scenario that occurs.The Council of Europe's Convention on Human Rights and Biomedicine (1997) requires that account is taken of a patient's previously expressed wishes (Article 9), demanding at least a minimal consideration of precedent autonomy. A number of European jurisdictions have gone further, seeking to clarify the standing of ADs and to promote legal certainty by providing statutory recognition of the importance and binding nature of at least some ADs.This seminar series will consider a range of European legislative responses to anticipatory decision-making, seeking to explore those responses within the practical contexts within which advance decision-making occurs. It will link legal discourse with policy and practice discourses, and consider how a shared understanding of the purpose and potential for anticipatory decision-making may facilitate the drafting of ADs that both reflect the author's intentions and are likely to be capable of implementation by healthcare professionals at a later date.

病人自主权原则强调尊重病人作为一个个体，而不是作为一个关注的对象;试图促进先例自主权，旨在将这种尊重扩大到那些不再能够行使自主权的人，从而将病人的愿望置于第三方评估的她的福利之上。预先决定/指令（AD）使个人能够在能力时期做出选择，这些选择将在未来当个人缺乏做出同期决定的能力时生效。提前医疗决策发生在一系列情况下，包括与临终治疗有关的决定，通常侧重于拒绝维持生命的治疗;与临终护理无关的身体健康护理的广告，包括例如通常包含积极治疗请求的生育计划（例如硬膜外）以及拒绝治疗;以及与精神科治疗有关的广告，其中患有严重精神疾病的个人列出他们的治疗偏好。在每一种情况下，AD都可以作为一种重要的机制，用于传达先例自主权，弥合失能的发生，并明确说明患者希望如何治疗，或者更常见的是患者不希望接受何种治疗。预期决策提供了很大的希望，可以为那些缺乏能力的人的赋权做出实质性贡献，但是在预期决策和同时决策之间存在重要的不对称，这可能潜在地破坏AD的法律的和道德权威。AD是一种单向的沟通形式，只有当患者缺乏能力，因此不再能够讨论替代治疗和护理方案，澄清她的愿望，或可能撤销她以前表达的愿望时才会生效。出现重大问题是因为，与当时的决定不同，广告的目的是在未来的治疗方案和治疗范围可能发生变化时生效，或者个人的利益可能与预期的根本不同。此外，还可能出现一些实际问题，包括如何确保反倾销是自愿的，以及个人有必要的能力提出反倾销，这些问题与反倾销与应实施反倾销的时间之间的时间和心理距离密不可分，但广告也质疑社会维护生命神圣性的利益与患者自决权之间的相互作用。因此，广告通常受到严格的有效性和适用性要求，要求通常给予负责实施AD的医疗保健专业人员很大的自由裁量权，以确定AD是否在发生的治疗方案中具有约束力。欧洲人权和生物医学公约理事会（1997年）要求考虑患者先前表达的意愿（第9条），要求至少最低限度地考虑先例自治。一些欧洲司法管辖区已经走得更远，寻求澄清的地位，广告和促进法律的确定性，提供法定承认的重要性和约束力的性质，至少有一些广告。这一系列研讨会将考虑一系列欧洲立法的反应，预期决策，寻求探索这些反应的实际情况下，提前决策发生。它将联系法律的话语与政策和实践的话语，并考虑如何共同理解的目的和潜在的预期决策可能有助于起草广告，既反映了作者的意图，并有可能能够在以后的日期由医疗保健专业人员实施。

项目成果

Childbirth, Vulnerability and Law - Exploring Issues of Violence and Control

分娩、脆弱性和法律——探索暴力和控制问题

• DOI: 10.4324/9780429443718-11
• 发表时间: 2019
• 作者: Halliday S

Advance care planning--a multi-centre cluster randomised clinical trial: the research protocol of the ACTION study.

• DOI: 10.1186/s12885-016-2298-x
• 发表时间: 2016-04-08
• 期刊: BMC cancer
• 影响因子: 3.8
• 作者: Rietjens JA;Korfage IJ;Dunleavy L;Preston NJ;Jabbarian LJ;Christensen CA;de Brito M;Bulli F;Caswell G;Červ B;van Delden J;Deliens L;Gorini G;Groenvold M;Houttekier D;Ingravallo F;Kars MC;Lunder U;Miccinesi G;Mimić A;Paci E;Payne S;Polinder S;Pollock K;Seymour J;Simonič A;Johnsen AT;Verkissen MN;de Vries E;Wilcock A;Zwakman M;van der Heide Pl A
• 通讯作者: van der Heide Pl A

Constructing the Foetus as a Patient: A Comparative Analysis of Compelled Obstetric Intervention

作为患者构建胎儿：强制产科干预的比较分析

• 发表时间: 2016
• 作者: Halliday S

Cases and Regulation of Advance Decisions in Germany

德国预先决定的案例和规定

• DOI: 10.1163/15718093-12540385
• 发表时间: 2018
• 期刊: European Journal of Health Law
• 影响因子: 0.8
• 作者: Albers M

Let Me Decide: The Health Care Directive That Speaks for You When u Can't...

让我来决定：当您不能时，医疗保健指令可以为您说话......

• 发表时间: 2016
• 作者: Molloy William